PALLIATIVE CARE ACT | 2018 - 2019 ANNUAL REPORT PALLIATIVE CARE ACT | 2018 - 2019 ANNUAL REPORT 11

ANNUAL REPORT2018-2019/ Contact Details

5 Flemington Rd, Lyneham ACT 2602PO Box 31 Campbell ACT, 2612offi ce@pallcareact.org.au02 6255 5771

www.pallcareact.org.auFacebook/ PalliativeCareACTTwitter @PallCareACT

PALLIATIVE CARE ACT | 2018 - 2019 ANNUAL REPORT PALLIATIVE CARE ACT | 2018 - 2019 ANNUAL REPORT 112

Our staff and volunteers operate across a range of settings, including in clients’ homes, residential aged care facilities, the Canberra Hospital and Clare Holland House (a hospice run by Calvary Health Care ACT).

// OUR MISSION

Palliative Care ACT’s mission is to infl uence, foster and promote palliative care through the delivery of quality care at the end of life for all and to off er support to the terminally ill, their carers and families.

// OUR OBJECTIVES

The Palliative Care ACT Strategic Plan 2017-2020 guides the organisation’s activities under four pillars:

• Access; • Sustainability; and• Service; • Partnerships.

// MAJOR SUPPORTERS

// BOARD OF DIRECTORS

• Louise Mayo AM – President• Constantinos Sfyris – Vice President• Jenni McMullan – Secretary• Anton Dowling – Treasurer • Jonathan Beaumont – Public Offi cer• Christina Richards – Director – Resigned

11/02/2019 • Vicki Thompson – Director• Kat Burggraaff – Director – Resigned

18/02/2019 • Carolyn Smith – Co-opted 04/03/2019

/ About

Palliative Care ACT is the representative voice for palliative care in the Australian Capital Territory. Formed in 1985, Palliative Care ACT is a not for profi t organisation, a registered charity and a founding member of the national peak body Palliative Care Australia.

Leonard, ALeila Haddad at the Thawra Valley ForgeLindt and SpungliLisle, RLloyd, B & KLodge Canberra UnityMacquarie TelecomMaggie BeerMaria Slater TravelMcDonald, B & J McDonnell, MMcInnes, MMcMullan, JMcMullan, KMercedes Benz CanberraMezzalira RestaurantMillard, MMilo, L Moore, CMorgans FoundationMostyn, SNational Gallery of AustraliaNational Zoo & Aquarium CanberraNunes, JO’Keeff e, POllif, COncology Massage LtdOsborn, COsborn, EOsborne, DOvolo NishiOyston, DPalace CinemaPalliative Care AustraliaPearson, APeek, T

Peisley, KPilkinton, HPotter, MPriority TreesQuiggin, PRainbird, WRath, MRamas RestaurantRay White Real EstateReis and James TravelRichards, CRolfe Classic BMWRoyal DoultonSack, BSadil Quinlan PropertiesSalkeld, M & CSloane, MSmith, CSmith, DSmyth, RSource Bulk Food, DicksonStals, JStyling YouSu, LSuncorpSutton, ST2Tan Me HappyTaylor, STez Automotive and Marine ServiceTFE HotelsThe Federal Monday Games GroupThe Property StylistThompson, VTrek Bicycle Majura ParkTroth, ATroy, M

Tweak Home StagingVMwareWallace, IWatsons Blinds and AwningsWestern Plains ZooWhitfi eld, LWilliam Cole FuneralsWilliamson, RWoolley, MYates, R

National Palliative Care Week 2019

33 7PALLIATIVE CARE ACT | 2016 - 2017 ANNUAL REPORT6 PALLIATIVE CARE ACT | 2016 - 2017 ANNUAL REPORT

/ SUSTAINABILITY

In 2018-19 Palliative Care ACT continued to operate as a professional, respected and fi nancially robust organisation.

Fundraising

To supplement the funding received for our palliative care volunteer program, Palliative Care ACT undertook a range of fundraising activities throughout the year, raising over $110,000. The fundraising committee assisted with a range of events including:

• a premier screening of the movie The Aftermath• the Annual Fundraising Dinner• a Bags, Beauty and Bling stall at the 360 degree

Fashion Market.

In addition, Palliative Care ACT gratefully received donations from a range of organisations, with all supporters listed at the end of this report.

Advocacy and Representation

At all levels Palliative Care ACT engages with Ministers, government corporate and not for profi t and community organisations. In 2018-19, Palliative Care ACT was an active participant in:

• ACT Palliative Care Clinical Network • ACT Capital Health Network• Health Consumers Care Association• ACT Bereavement Group• ACT Cancer Psychosocial Network• Canberra and Region Aged Services Network.

Palliative Care ACT worked closely with Palliative Care Australia and other state and territory palliative care

peak bodies to inform and support the development of Commonwealth and State/Territory government submissions.

Uniform and Unifying Palliative Care ACT

Palliative Care ACT was invited to pilot palliative care volunteers in The Canberra Hospital. As part of the pilot our volunteers needed to be identifi able. To meet this requirement, a decision was made to introduce branded shirts for volunteers in all institutional settings from 1 July 2019. The shirts will benefi t Palliative Care ACT through improving visibility of our volunteers, increasing awareness of our work and highlighting the professional role of a palliative care volunteer within the specialist palliative care teams.

Staff Development

Palliative Care ACT is committed to supporting its staff to develop their skills and enhance their professional knowledge. In 2018-19 Palliative Care ACT staff attended the following:

• Bereavement of Same Sex Partners webinar• Australian Healthcare Association – Barriers to

Palliative Care for underserved populations• Cross cultural information sessions – Aboriginal

and Torres Strait Islanders• In-house team building workshops • Voluntary Assisted Dying Symposium.

likely demand for, and viability of, a non-clinical respite service. This study reviewed the available data, evidence, policy context and information on the preferences of people with a life-limiting illness and their carers. It validated the value that could be created by establishing a non-clinical home like service which provides overnight and day respite and carer support, now known as “the Hub”.

Recommendations from the scoping study were presented to the Palliative Care ACT Board and a Strategic Advisory Committee was established in October 2018 to provide advice to the Palliative Care ACT Board on further development and implementation of the Hub. This committee provides strategic leadership and advice, monitors identifi ed and emerging risks, advises on prevention, mitigation and management of risks, and provides support and assistance in the implementation of the Hub. The committee reports regularly to the Palliative Care ACT Board on progress.

The Hub 2020

Our Hub 2020 campaign was offi cially launched at the 2018 fundraising dinner. The vision is that the Hub will be a place where those with a life-limiting illness can

spend a few hours or a few days. They will be cared for in a warm, peaceful ‘home away from home’ environment with care provided by non-clinical support staff and volunteers.

In this reporting period, Palliative Care ACT has continued to work towards the goal of the Hub being built in the ACT to service the ACT and surrounding region.

The President of Palliative Care ACT briefed the ACT Minister for Health, the ACT Health Directorate and the Commonwealth Department of Health on the Hub. Discussions have been held with a range of corporate partners and developers to seek support for the Hub. A proposed model of care for the Hub was developed and early work was undertaken on a strategy to raise capital and ongoing operational funding. A grant was received from the John James Foundation to support development work on the Hub.

Formal Submissions

In 2018-19, promoting the voice of palliative care in the ACT, Palliative Care ACT provided input into the following:

• Palliative Care Australia’s Palliative Care and Voluntary Assisted Dying policy statement

• the ACT Government’s Select Committee Report on End of Life Choices in the ACT

• Palliative Care Australia’s submission on palliative care to the Royal Commission on Aged Care Quality and Safety

• with other state and territory peak bodies, the Palliative Care Australia and Dementia Australia joint Policy Statement on Palliative Care and Dementia.

Private Monet tour in partnership with the National

Gallery of Australia

The Hub fundraising ‘Brick Coin’

PALLIATIVE CARE ACT | 2016 - 2017 ANNUAL REPORT8 PALLIATIVE CARE ACT | 2016 - 2017 ANNUAL REPORT 5

/ PARTNERSHIPS

Palliative Care ACT has again worked closely with Palliative Care Australia in 2018-19. Palliative Care ACT provided input into the Palliative Care Service Development Guidelines 2018, the National Palliative Care Standards (5th edition) and the Palliative Care and Voluntary Assisted Dying Position Statement.

National Palliative Care Week

Palliative Care ACT partnered with Palliative Care Australia to launch National Palliative Care Week at Villaggio Sant’ Antonio, a Canberra residential aged care facility. This year’s theme was ‘What Matters Most’.

During the week, Palliative Care ACT launched Life-Limiting Illnesses in the Workplace: A Toolkit for Managers and HR Professionals with Bec Cody MLA at the National Gallery of Australia. The event was attended by a range of senior managers from the public and private sectors. The toolkit provides best practice resources and information to assist managers, team leaders and human resource professionals support employees dealing with end of life issues.

The toolkit provides practical advice that can be easily implemented in any workplace and can also start conversations about end-of-life issues outside of the workplace. Another goal is for the toolkit to assist managers to develop formal workplace policies and practices to support employees when they need it most.

National Gallery of Australia

Palliative Care ACT was happy to partner with the National Gallery of Australia to facilitate free private guided tours of the Monet: Impression Sunrise exhibition for clients and their carers. The gallery allowed a number of private tours of the exhibition, commencing at 9am before the gallery opened to the public at 10am.

Canberra Quilters

Palliative Care ACT received several dozen beautifully crafted quilts from Canberra Quilters in 2018-19. The quilts were very much appreciated by patients at Clare Holland House and residents living with a life-limiting illness in residential aged care facilities.

Canberra City Care Sewing Group and the ACT Textile Art Group

Palliative Care ACT received heat packs and syringe driver bags made by the members of the Canberra City Care Sewing Group and the ACT Textile Art Group for use by patients in Clare Holland House and in the community.

Cuppacumbalong Foundation

The Cuppacumbalong Foundation is off ering one day workshops for carers in the ACT at the Tharwa Valley Forge where, in partnership with Palliative Care ACT, a carer can have a day’s respite from their caring role and make a garden sculpture to commemorate the person benefi ting from their care.

massage and our mandatory training modules – professional boundaries, infection control, safe food handling, work, health and safety, compulsory reporting of assaults and confl ict of interest.

Annually all volunteers complete mandatory training updates and undertake an on-line training assessment.

Volunteers are also off ered monthly in-service sessions on various topics relevant to their volunteer work, in order to remain current and ensure full competency.

Life Story Program

The opportunity to reminisce and validate one’s life very often provides physical, mental and emotional benefi ts. In 2018-19 sixteen volunteers completed Life Story writer training. During 2018-19, the fi rst full year of the program, Life Story volunteers completed 26 stories for clients with a life-limiting illness. Palliative Care ACT acknowledges Suncorp and its ACT-based staff , who in May 2018, elected to support the Life Story program for two years as its corporate charity.

Massage Program

Palliative care massage is a way of

improving a person’s quality of life by bringing signifi cant relief of pain and anxiety, increasing relaxation and inner peace. Palliative Care ACT’s fund raising initiatives support a range of programs, including qualifi ed oncology massage therapists for patients and carers at Clare Holland House and for clients in their homes. This year 261 massages were provided by our trained oncology massage therapists and all volunteers are trained in hand and foot massage.

Therapeutic Harpist Program

Music therapy in palliative care has been shown to signifi cantly reduce pain, anxiety, the need for pain medication and can assist with sleep and deep rest. Palliative Care ACT engaged Alison Ware, Therapeutic Harpist, to provide music therapy sessions to patients in Clare Holland House. Alison provided 16 hours of music in 2018-19, which was well received by patients and their families.

Volunteer Engagement

During 2018-19 Palliative Care ACT continued to grow its professional, committed, responsive and compassionate volunteer workforce. Palliative Care ACT’s community work depends on this volunteer workforce. In addition to palliative volunteers, Palliative

Care ACT has other volunteers who contribute to fundraising, administrative support, the Pallcare Singers choir, and as members of governance bodies.

Palliative Care ACT is fortunate to have so many committed and long standing volunteers. At the Annual Volunteer Appreciation Event, held at the Tom Elvin Centre on 23 May 2019, we acknowledged and thanked nine volunteers with fi ve years’ service, one who has given 15 years, and another three who have provided 20 years of volunteer service with Palliative Care ACT.

Palliative Care ACT would also like to thank the members of the Volunteer Advisory Committee. The committee was established in 2015 to provide a two-way communication forum for Palliative Care ACT Board, staff and volunteers. It was an integral part of the smooth implementation of organisational and program changes and at the February 2019 meeting, after the changes had been implemented, the committee agreed it was no longer necessary and disbanded.

Research

Palliative Care ACT commissioned Auxilium Advisory to undertake a scoping study to understand the

PALLIATIVE CARE ACT | 2018 - 2019 ANNUAL REPORT PALLIATIVE CARE ACT | 2018 - 2019 ANNUAL REPORT 94

INCOME AND EXPENDITURE

Revenue Client support services Employee benefi ts expense Depreciation expense Volunteer Program expense Audit and consultancy expense Funding and program expenses HUB expense Investment expenseVehicle expenseInsurance expense Advertising and promotional expenses Other expenses

Net current year surplus

TOTAL COMPREHENSIVE INCOME

ATTRIBUTED TO MEMBERS

For complete fi nancial records please go to www.pallcareACT.org.au

FINANCIAL POSITION

/ ASSETS

Current AssetsCash & equivalents Accounts receivable & other debtors Financial assets – short term investments Financial assets – shares Other current assets

TOTAL CURRENT ASSETS

Non-Current AssetsProperty, plant and equipment TOTAL NON-CURRENT ASSETS

TOTAL ASSETS

/ LIABILITIES

Current LiabilitiesAccounts payable and other payables Other liabilities Employee Provisions

TOTAL CURRENT LIABILITIES TOTAL LIABILITIES NET ASSETS

/ EQUITY

Retained Surplus

TOTAL EQUITY

/ Financial Report

793,327(12,170)

(476,732)(12,111)

(2,768)(20,075)(63,613)(59,334)(10,772)(10,209)

(9,004)(3,008)

(41,873)

$71,658

$71,658

372,0728,545

664,921

165,936 14,994

$1,226,468

23,415

23,415

$1,249,883

23,355191,168

35,929

250,452250,452

$999,431

$999,431

$999,431

$999,431

/ ACCESS

Palliative Care ACT works toward enabling all members of the community to have access to high quality palliative care and end of life support, so they can die with dignity and respect, at a place of their choosing.

Community Awareness

In 2018-19, Palliative Care ACT delivered a number of education and information sessions to professional services and the wider community. These presentations focused on grief and bereavement, defi ning palliative care and death literacy.

Palliative Care ACT was invited to host an information stall at the Canberra Region Cancer Centre at the Canberra Hospital to mark World Cancer Day on 4th February 2019. Information on services provided by Palliative Care ACT was provided to many people at this event.

Digital Platforms

The Palliative Care ACT website is easy to navigate, information

rich and refl ects the perspective of people accessing it. A complementary mobile app was launched in March 2019 providing access to information on the go.

Our social media presence extended our messaging to a broader audience, and this year reached 45,226 people.

Margaret Corden Scholarship

In 2018-19, this annual scholarship was used in a joint project with the Australian and New Zealand Association of Psychiatry, Psychology and Law ACT to host a full day workshop with Australian experts in the intersecting areas of Law, Mental Health and Palliative Care. The workshop examined the key issues in introducing voluntary euthanasia in the ACT, highlighting overlapping challenges and ethical considerations across the intersecting professional fi elds.

/ SERVICE

Palliative Care ACT recruits, trains and manages palliative care volunteer services for people with a life-limiting illness in the ACT and surrounding community. This year

volunteers gave 11,567 hours of palliative support through:• Clare Holland House patient

support - 6,121 hours• Home-based support - 2,500

hours to 93 clients• Residential aged care facilities -

1,472 hours to 72 clients• Life Stories - 644 hours • Clare Holland House reception

- 384 hours• Clare Holland House

bereavement card writing - 335 hours

• The Canberra Hospital specialist palliative care clinic – 47 hours

• Clare Holland House music team - 42 hours

• Motor Neuron Disease clinic - 22 hours

A continuing demand for palliative volunteer support resulted in Palliative Care ACT training and inducting 40 new volunteers in 2018-19. Volunteer training consists of 16 hours of face-to-face training. The training modules include: what is palliative care, the role of a volunteer, communication skills, diversity, spirituality, illnesses and care, death and dying, grief and loss, self-care of the volunteer, as well as basic hand and foot

/ Achievements Against Objectives

PALLIATIVE CARE ACT | 2018 - 2019 ANNUAL REPORT PALLIATIVE CARE ACT | 2018 - 2019 ANNUAL REPORT 310

The generosity of our supporters has enabled Palliative Care ACT to promote and advocate for palliative care services, increase community awareness, create resources, and deliver quality volunteer services to the ACT community. Palliative Care ACT sincerely thanks all who supported us in 2018-2019.

4 Corners Picture FramingACT GovernmentACT Textile Art GroupAinslie Football ClubAllegra Wealth ManagementAllen, FArena Social ClubAustralian Healthcare AssociatesBarrett, RBausch, MBeaumont, JBirdsnestBison HomewaresBlessington, MBlue Arc IT SolutionsBob Jane T-MartBody, JBradley, JBrady, P Brooks, JBrumbies RugbyBull & Bear Special Assignments Pty LtdBunningsCairns, G

Campfi re EscapeCanberra Cavalry Baseball TeamCanberra City Care Sewing GroupCanberra Holistic HealthCanberra Organ SocietyCanberra QuiltersCanberra Southern Cross ClubCapital Chemist CharnwoodCataldosClean Energy Regulator - Social ClubClear ComplexionsColledge, MConnell, KContent GrasshopperContentious Characters Crane, MCrawford, J Creative Image HairdressingCSIRODaley, DDaly, SDanzon Social DancingDavidson, MDebenham, MDelvDillon, RDowling, ADownie, E DXC ConnectEast HotelEat Your Words CateringElvin GroupEscape Rooms CanberraEstate Tuscany

Fitness FirstFitzgerald, WForster, PFox AntiquesFraser, GFraser, MGalvin, EGecko GangGema GroupGliddon, GGoggin, DGourmet by DesignGWS GiantsH2O SpaHarber, M & DHarrington, PHeartstory PhotographyHogan, AHolland, MHorton, DHutchinson, EHyatt HotelHyde, GItalian & SonsJackson, SJet Flight SimulatorJiggins, TJo-MelJohn James FoundationJudd, SKelly, MKing & Wood MallesonsKitchen, JLake George HotelLawrence, D & S

/ Our Supporters (not including members)

It is with pleasure that I commend to you the Palliative Care ACT Annual Report. This year we have made signifi cant progress in key areas of leading and informing the community about palliative care support services, strengthening and building key partnerships, and building capacity across the sector by supporting those living with life-liming illnesses and their families.

On behalf of my colleagues on the Board, I would like to begin by expressing my sincere thanks to the wonderful work of our committed, passionate, caring volunteers and staff . They have all played a key role in the provision of high-quality palliative support services in 2018-19. At Palliative Care ACT we have 157 trained palliative volunteers, who are committed to working with individuals and their families as they navigate their end of life journey. In 2018-19 we provided 11,567 hours of support services to people in Canberra and surrounding regions.

The Palliative Care ACT Board and staff have been actively working over the past year to implement the fi ndings of the scoping study that investigated ways palliative care support services could be expanded

or extended to provide more assistance to carers who support individuals wishing to die at home. Your Board made the strategic decision to design and build a respite home – fondly named “the Hub” – to be a place where people with a life-limiting illness can go for a few hours, or a few days, either on their own or with their carer. Our vision is for a warm, peaceful ‘home-away-from-home’ with caring staff and volunteers, where carers can also come to receive help and respite.

In 2018-19, we have been laying the groundwork for the Hub and have completed the model of care, met with the ACT government to gather support, and received many generous off ers from our business community to help us achieve this fi rst of its kind respite home for the Canberra community.

As a Board, we are now looking to the future of Palliative Care ACT and can see many opportunities where the work of our volunteers can make a continuing contribution to the quality of end of life journeys for individuals, their families and friends. I would like to thank the Board and all Committee members for their

commitment. Each one brings a diff erent experience and skill set, allowing us as a Board to be fully focused on the future directions of Palliative Care ACT. We are dedicated to ensuring the delivery of high-quality palliative support services for our community.

Finally, I would like to thank our wonderful staff . Your energy, commitment and passion is what drives our organisation to deliver excellent palliative support services. Each of you excel and provide an enormous professional and personal contribution to Palliative Care ACT.

Louise Mayo AMPresident

/ President’s Report

Toolkit launched duringNational Palliative Care Week